Impact Factor 1.0
Volume 34, 12 Issues, 2024
  Letter to the Editor     February 2024  

Response to Referral Profile of Developmental Disabilities at a Tertiary Care Hospital in a Resource-limited Country

By Sarah Razaq1, Fahim Anwar2

Affiliations

  1. Deparment of Physical Medicine and Rehabilitation, Combined Military Hospital, Mangla Cantt, Punjab, Pakistan
  2. Department of Rehabilitation Medicine, Addenbrooke’s Hospital, University Hospitals NHS Foundation Trust, Cambridge, United Kingdom
doi: 10.29271/jcpsp.2024.02.251

Sir,

We read the recent article by Jafri et al.1 with great interest. We appreciate their effort to bring a very important and less discussed topic of childhood developmental disabilities in Pakistan into the limelight. We also observed that the referral is being done for speech, behaviour, and learning problems, which were previously not given requisite consideration for medical evaluation in Pakistan. Hence, these children continued to suffer grave psychological issues in adulthood. Herein, we are concerned about the referral pattern, which has not mentioned Physical Medicine and Rehabilitation (PMR) involvement at any step of the services. Secondly, we want to highlight some crucial aspects that need to be addressed while dealing with developmental disabilities in childhood.

The presentation of diverse developmental disorders is complex, which not only involves behavioural and learning disabilities but there might be associated physical or musculoskeletal abnormalities, which need to be addressed and require continuous comprehensive impairment-based evaluation while growing-up. The respiratory difficulties, recurrent infections, sleep abnormalities, and impairments in activities of daily living like personal hygiene/bathing, dressing/grooming, feeding, and toileting also need prompt evaluation and longitudinal management.2,3

The need for appropriate equipment in the form of respiratory devices, mobility aids, orthotic supports, and splints should be optimally evaluated and utilised. The overall management should not involve few hospital visits or one-time referral; rather, it should emphasise on series of visits and a continuum of coordinated care/services in the community and the schools. Developmental disorders may influence nearly all aspects of a child’s life, interfering with family functioning, peer relationships, academic and extracurricular activities, and future functioning.4 Hence, lifelong disability management needs to be kept in mind, and the concerned physicians need to preempt the difficulties and problems faced during the transition from paediatric to adult services.

During adulthood, the goals also vary, which may focus on independent living, marriage and sexual rehabilitation, and vocational and avocational aspects of the individual. Even in developing countries with good medical and rehabilitation care, the mean age is on the rise,5 and we need to consider ageing with disability, palliation and end-of-life care planning. The family support system is a blessing in Pakistan, where the parents, siblings, and close relatives offer financial, moral, and caregiver support to the person, thus minimising the responsibility of the statutory services and improving patient care.

In short, we advocate the role of comprehensive and multidisciplinary evaluation of children with developmental disabilities as it is not a single disease entity; rather, it involves every aspect of the individual and stays lifelong. The rising awareness among parents to seek medical guidance for the issues mentioned in the article is encouraging. Last but not the least, the role of PMR as a speciality and the multidisciplinary team (MDT) approach in such disorders' lifelong optimal management is crucial and needs to be highlighted. It is also essential that PRM services should be established in all the major teaching hospitals where these complex patients are cared for as inpatients and outpatients.

COMPETING INTEREST:
The  authors  did  not  declare  any  conflict  of  interest.

AUTHORS’ CONTRIBUTION:
SR:  Drafting  the  manuscript  and  revising  it  critically.
FA:  Conception  and  design.
All authors approved the final version of the manuscript for publication.

REFERENCES

  1. Jafri SK, Alam A, Raja H, Ali NG, Shaheen F, Ibrahim SH. Referral profile of developmental disabilities at a tertiary care hospital in a resource-limited country. J Coll Physicians Surg Pak 2023; 33(08):944-6. doi: 10.29271/ jcpsp.2023.08.944.
  2. Lang R, Regester A, Rispoli M, Pimentel S, Camargo H. Rehabilitation issues in autism spectrum disorders. Dev Neurorehabil 2010; 13(3):153-5. doi: 10.3109/17518421 003607597.
  3. Razaq S, Aleem A, Amjad T. The natural predominant sleeping positions In cerebral palsy; does it correlate with the type of cerebral palsy? Pak J Neurol Sci 2019; 14(3): 7-9. Available from: https://ecommons.aku.edu/pjns/vol14/ iss3/7
  4. Gleason MM. Behavioral Disorders of Childhood. In: Elzouki AY, Harfi, HA, Nazer HM, Stapleton FB, Oh W, Whitley RJ, Eds. Textbook of Clinical Pediatrics. Springer: Berlin; Heidelberg; 2013.
  5. Jalal S, Younis MZ. Aging and elderly in Pakistan. Ageing Int 2014; 39:4-12. doi: 10.1007/s12126-012-9153-4.
     

Authors Reply Section

By Shahnaz Ibrahim

Affiliations

  1. Prof. Shahnaz Ibrahim, Department of Paediatrics and Child Health, The Aga Khan University Hospital, Karachi, Pakistan

 

AUTHOR’S REPLY

Sir,

We would like to thank our esteemed colleagues, who made the effort to highlight a new facet of childhood disability through their letter.

Developmental disabilities as defined by CDC 2018 is a term used to refer to “a group of conditions due to an impairment in physical, learning, language, or behaviour areas. These conditions begin during the developmental period, may impact day-to-day functioning, and usually last throughout a person’s lifetime. This construct is multidimensional, thus involving many facets and stakeholders.

The main limitation of our study was that we were not able to capture the full profile of the broad spectrum of developmental disabilities in detail, owing to the retrospective data.1 Additionally, the comorbid conditions that do occur with developmental disabilities were beyond the scope of this study.

Our hope through this paper is to pave the way for further studies on different aspects of developmental disabilities with robust study designs.

REFERENCES

  1. Jafri SK, Alam A, Raja H, Ali NG, Shaheen F, Ibrahim SH. Referral profile of developmental disabilities at a tertiary care hospital in a resource limited country. J Coll Physicians Surg Pak 2023; 33(08):944-6. doi: 10.29271/ jcpsp.2023.08.944.